It must be hard to be a parent to a child who has complex medical problems. My mother does so much for me and is there for me every step of the way. She's a single mom who has given up everything for me. She used to work as a Child and Family Social Worker but now she's taken on so many other roles instead. When I've been admitted to the hospital for months at a time, and she's right there at my bedside 24/7. She's gotten over her fears and learned how to inject me with medicine, how to do bandage changes, and how to work IV machines. Even after the 300+ blood tests, needles and IV starts, I'm still "cautious" around needles. My mom is there to shield my eyes and to help me to concentrate on my breathing while the nurse digs around for my missing veins. Since I can only attend school for 1.5hrs each day, my mom has taken on the role of teacher. I think we are teaching one another since I often end up teaching her, especially math and science. My mom is my medical coordinator. I have 9 specialists involved in my medical care. With that many people involved, it's important that one knows what the others are doing and changes they're thinking of making. For example, if psychiatry were to change my ADHD medication, it could have a direct impact on what's going on with my heart. My mom is the one who sits for hours e-mailing doctors with updates, keeping the school informed as to my progress, and memorizing every single detail of my medical care. Having pretty much an appointment a week when I'm not in hospital and at times having long admissions to the hospital, my mom cannot work. But yet she always makes sure that us kids get what we need, and then gives us a few "extras". My mother is in the league of parent superheroes.
Did you know that hospital treatment rooms have an impact on parents too? My mom has often told me that walking into one of the treatment rooms feels like a heavy weight has been placed on her. Having me bored to tears in the room doesn't help her day to go any easier. She's already worried about me and whether the treatments are going to work, that helping me with my boredom and trying to distract me from what's going on, makes so much extra work for her. Jacob's Healing Rooms is about more than just helping sick kids have a healing place to receive treatment. It's also going to help the parents of these kids too. It can help to take the pressure and anxiety off of the day. I know that when I'm smiling, it makes my mom smile too. Please help me help bring smiles to sick kids, so that I can bring a smile to their parents' faces too.
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